Need advice

[dfyang123]

My 20 year old son visited his GI doctor this morning, he is going to have either Remicade or Humira soon, also with Methotrexate to prevent antibody developed with Remicade. I thought Methotrexate alone can treat CD, why both? Even though GI said the Methotrexate is mild dose, I don't know how mild it is yet. By the way, my son's CD is mild to moderate. I know Biologics treat moderate to severe CD effectively, but I don't know how effective to mild patients, does anyone know about it? I thought the remicade dosage will be less compare to those moderate to severe cases, but was told the same 5mg every 8 weeks after loading dose, I'm afraid this will suppress my son's immune system too much. Another question I have is that from reading this forum, I know some patients use remicade only, for those patients, what's the pacentage they develop antibody later on? If not much, I'd rather my son take chance than to take both medicine. Any comments and advice are appreciated.

 

[ronroush7]

I am going to tag Clssh

 

[shamrock15]

I am currently on remicade (8 years) and imuran (7 years) and it is still effective. I have stricturing crohn's and remicade was the only thing that was known to keep it under control when I started it. It is possible that your son's is a similar case so that while it may be mild to moderate right now it will prevent his disease from advancing.

Hoping for the best for your son.

 

[tots]

I have been on Remicade just about one year. Still have symptoms, and I am waiting for my Dr to add a second medication. I just wan to feel better. The longer I am out of remission the hard to regain it.

Good luck, I know these decisions are not easy to make.

Lauren

 

[Kevin_61]

Your Son is in my prayers and I wish him the very best!
I was just recently told by my GI Dr. that I have Crohn's.
I'm about ready to just stop eating. The medication is Over $800.00 !

 

[Sophia]

I've been on Indliximab only since February 2014, and it seems I have started to develop antibodies now. I don't know the benefits/downsides to taking both medications, I'm sorry. I understand that you are worried about the lowered immune system, and I suppose everyone can react differently. I have been lucky and have not had any trouble with that. I usually carry antibacterial liquid with me, and I don't hang out with people who are sick unless I have to. Other than that I live a normal life. Not sure whether Remicade is the right drug for mild disease, but this should be up to the doctor. Weighing the pros and cons aren't always easy. :/ Best of luck!

 

[DougUte]

I think that using Remicade for mild disease is like hammering a nail with a sledgehammer. Make sure you consider the alternatives.

 

[ronroush7]

Your Son is in my prayers and I wish him the very best!
I was just recently told by my GI Dr. that I have Crohn's.
I'm about ready to just stop eating. The medication is Over $800.00 !

I stopped Remicade at one point because of expense. Big mistake

 

[canary]

I took Remicade when it was first released intermittently, before the newer dosing regulations were released. My 5th infusion went very badly - I stopped breathing - but that was only because I was not prescribed it regularly and my system had time to develop antibodies.

combination therapy - using biologics with methotrexate or azathioprine - can increase the efficacy of biologics at the cost of increasing liver damage, though the chance of liver damage is miniscule. There's also a chance he won't be kept on that immune modulator for long. This article suggests 6 months is an effective length of treatment for immune modulators once beginning biologic therapy.

I'm on my ninth year of azathioprine and humira.

 

[Kevin_61]

I stopped Remicade at one point because of expense. Big mistake

Thanks for your reply! I just don't have that type of $ money-$$$ and there has to be some sort of alternative, otherwise it appears I just have to watch what I eat and suffer it out I guess! IBS,Pelvic floor dysfunction,rectal- prolapse,Stomach Ulcer which is under control with Nexium.

 

[dfyang123]

I think that using Remicade for mild disease is like hammering a nail with a sledgehammer. Make sure you consider the alternatives.

Do you have any alternatives to suggest? Right now we are postponing my son's new treatment this summer, because he has an intern job in Seattle, he is in California now. GI doctor already approved this, thought no big deal to wait for another 3 or 4 months. During this time I'm thinking to try differnent things like diet, herbs or any other type natural things to see if he can get any better.

 

[dfyang123]

Does anyone know someone with mild Crohn's treating with Remicade?

 

[canary]

Remicade seems a bit like overkill for mild Crohn's.

 

[dfyang123]

Thanks for your reply! I just don't have that type of $ money-$$$ and there has to be some sort of alternative, otherwise it appears I just have to watch what I eat and suffer it out I guess! IBS,Pelvic floor dysfunction,rectal- prolapse,Stomach Ulcer which is under control with Nexium.

I thought you can have Remistart program to help offsetting the out of pocket expense. I heard people in the forum talking about this. I checked with my son's clinic, if got approved he only need pay $5 per infusion. Check out:
http://www.remistart.com/

 

[aypues]

I thought I had mild Crohn's but it turns out after lots more diagnostics and imaging that it is moderate to severe...i just dont have the pain. I'm not sure about a truely mild case of Crohn's...is that even a real thing? Like saying you have a mild case of Ebola? The thinking now is to treat it aggressively to alter the natural course of the disease so that surgeries won't be needed in the future. That being said, maybe try Entocort if it really is mild, but do a disease reevaluation (labs, MRE, colonoscopy) not longer than 1 year to see if it is really working. I've been on it for years, but it didn't really control the disease so now going on Humira and 6MP. Humira has a permanent copay assistance program that makes it $5 per script. The true cost is outrageous...the starter pack I just got is priced at $11,000.

 

[aypues]

I took Remicade when it was first released intermittently, before the newer dosing regulations were released. My 5th infusion went very badly - I stopped breathing - but that was only because I was not prescribed it regularly and my system had time to develop antibodies.

combination therapy - using biologics with methotrexate or azathioprine - can increase the efficacy of biologics at the cost of increasing liver damage, though the chance of liver damage is miniscule. There's also a chance he won't be kept on that immune modulator for long. This article suggests 6 months is an effective length of treatment for immune modulators once beginning biologic therapy.

I'm on my ninth year of azathioprine and humira.

Interesting article, although it is 8 years old now. I wonder what the new research is showing regarding discontinuation of combination therapy vs just staying on it. I'm actually more concerned with the small risk of hepatosplenic t-cell lymphoma in combination therapy which is like 99% fatal and affects young men predominately.

 

[dfyang123]

Thank you for quick reply. Yes, my son did a lot of tests. Since the end of last year, he did 2 colonoscopy because of switching GI doc, MRI, Fecal, lab. All shows mild and persistant inflammation only in his colon, he doesn't feel anything, total symptom free except the first few months before diagnose, he had blood in his stool.

 

[dfyang123]

Interesting article, although it is 8 years old now. I wonder what the new research is showing regarding discontinuation of combination therapy vs just staying on it. I'm actually more concerned with the small risk of hepatosplenic t-cell lymphoma in combination therapy which is like 99% fatal and affects young men predominately.

I read this too, I'm scared of that too. But doctor said the risk is still very low. Who knows.

 

[Sophia]

If he is symptom free it seems very strange to start him up on a biological. :/ Why aren't steroids used to try to kick back the inflammation? What about Mezalazine (you say his inflammation is in the colon)? In my case I had several hospitalisations and several really bad flare ups over the course of six years before I was given Infliximab. But I suppose it is different if you have health insurance. I come from a country where the government pays for health care.

 

[ronroush7]

I agree that Remicade seems kind of too much for someone with a mild version of the disease

 

[dfyang123]

If he is symptom free it seems very strange to start him up on a biological. :/ Why aren't steroids used to try to kick back the inflammation? What about Mezalazine (you say his inflammation is in the colon)? In my case I had several hospitalisations and several really bad flare ups over the course of six years before I was given Infliximab. But I suppose it is different if you have health insurance. I come from a country where the government pays for health care.

My son tried 2 years of Lialda and still the only medicine he is using now, but scope showed he still has inflammation which means this medicine is not working for him well or not strong enough. I thought the next step up will be the steroids, but doc ruled out this options, he think biologics is better. I don't understand the logic behind. I'm hoping if steroids can induce remission then maybe Lialda alone can keep my son in maintenance. At least I thought this worth to try. I will communicate with his doctor again.

 

[Clash]

Steroids are not for long time use. Your son can do a run of steroids but during that time he will also need to start a maintenance med. Since the meds he's using have failed to help then he needs to try something stronger for a maintenance med. The options are immune modulators like 6mp, imuran or methotrexate or biologics.

Many GIs have shifted to the treatment model of top down. Meaning hitting the disease with the biologics first in an effort to get the patient into remission quickly and keep the bowel healthy with mucosal healing. The goal is to keep the bowel healthy with mucosalt healing so that remission is deep and stable so that inflammation even simmering inflammation(mild disease) doesn't create stricturing which can lead to obstructions and surgery.

Steroids aren't meant to be used long term due to the severity of damage they can do to bones and also you become a high risk of developing Cushing's disease. It's used to dampen the inflammation(once you stop steroids the inflammation comes back) while the maintenance med build up to therapeutic levels.

 

[DougUte]

Do you have any alternatives to suggest? Right now we are postponing my son's new treatment this summer, because he has an intern job in Seattle, he is in California now. GI doctor already approved this, thought no big deal to wait for another 3 or 4 months. During this time I'm thinking to try differnent things like diet, herbs or any other type natural things to see if he can get any better.

This is a great battle in the G.I. world, should you treat in a "bottom up" vs a "top down" method. The "bottom up" theory is that you try to control the disease with the most mild medication possible. Since this method usually means least expensive treatments first, the insurance companies will sometimes require this approach. If azathiropine, asacol, or mesalamine, can control the disease, they should be used first. Biologics are the heavy artillery in the arsenal and should only be used in severe cases.

In the "Top Down" approach meds such as the biologics (Humira, Remicade, etc..) are used first in order to ensure the disease does not progress, and to induce a deeper remission. In my experience the G.I. docs would love to be able to do this. When my insurance company refused to pay for Humira before trying Asacol and Mesalamine, my GI at the time said taking Asacol and Mesalamine was like "Pissin' in the Wind!''

I am not saying you should not do the top down approach, I just feel that you need to make an informed decision.

 

[tots]

Hi dayang123-

I just noticed you live in Bellevue- I used to live in Kirkland.

My GI was right next to Evergreen Hosp and he really was the best. I was very sorry to have to move and leave his care. If you ever want a second opinion, he's great. At the time I was
pregnant and wanting to nurse after he was born. Well, I flared up after he was born and he took the time to call a bunch of drug companies to get the right mix of meds I could take and
still be safe to nurse.


Good luck with your son.


Lauren

 

[dfyang123]

Hi dayang123-

I just noticed you live in Bellevue- I used to live in Kirkland.

My GI was right next to Evergreen Hosp and he really was the best. I was very sorry to have to move and leave his care. If you ever want a second opinion, he's great. At the time I was
pregnant and wanting to nurse after he was born. Well, I flared up after he was born and he took the time to call a bunch of drug companies to get the right mix of meds I could take and
still be safe to nurse.


Good luck with your son.

Lauren

Hi Tots,
Great to know that you lived in Kirkland before, I used to live in Kirkland too, very close to Kirkland Costco. Anyway, thank you so much! My son's GI doc in Bellevue Overlake, but he now have another GI doc in California since he is in college now, if he decides to come back after graduation, I'm glad to let him switch to your GI doc. Could you let me know his name? I'll save his info for later. I'm hesitated to do so now because my son just switched to this California GI, he did a bunch of tests, the same results as before and the same recommendation from both docs. If my son sees another one, I'm afraid the doc will do another round of tests, waste money and energy. Right now we decide to postpone the Remicade until my son goes back to college this fall, at the meantime we are going to try alternatives, maybe natural path.

 

[GinaKay]

boy i got lots to learn about meds n junk glad yall r here im learning everything early lol .... tots i see ur in austin my son goes down there for uil meets for science in hs ...

 

[tots]

I would be careful with the delay in medication. I did that and it has now spread into other areas of my colon. I personally did not have symptoms that led me to believe it was that active.

Where does your son go to school in Calif?

I will get you the Drs name. I know it started with a Z!




Lauren

 

[tots]

GinaKay-

We lone the Austin area. Although maybe not today with all the storms coming through!


Lauren

 

[ronroush7]

I would be careful with the delay in medication. I did that and it has now spread into other areas of my colon. I personally did not have symptoms that led me to believe it was that active.

Where does your son go to school in Calif?

I will get you the Drs name. I know it started with a Z!




Lauren

I stopped Remicade and ended up with an obstruction.

 

[Kevin_61]

Yesterday I called out to my GI Doctor regarding getting financial assistance
for my pills,the Front desk answered and she is out until Monday.
(Lady Dr.) I thought it was going to be Remicade, but the girl at the front desk says it's one of the milder medicine, I forget exactly which one she said, but,the Dr. is working on it and will call me sometime next week and let me know whats going on!
$800.00 is just waaaaaaay Out there! I have good days and then bad days! I know over the last five years I have OD'd on Milk of Mag, Prune Juice, Senna Tea,You name it I've tried it! However,regarding finding out what I have got,then I've came a long ways since Hemorrhoids! IBS-C Prolapse, Last year for a couple months-Collagen Colitis, And I have a stomach ulcer which is under control w Nexxium.